On Mikaere’s path at Mikaere’s pace

It’s been a while since I’ve seen our friends with babies. My NCT friends have all gone back to work and their babies are all in nursery or with nannies. Our other friends with babies – they’re in the process of going back to work too. Which means that weeknight visits are tricky, because they eat into family time. As do weekends. Our catch ups are now scheduled weeks, months in advance. Gone are the casual, spontaneous semi-regular catch ups.

That’s tough. I miss them.Partly because they’re wonderful people, but partly because without them and their beautiful babies I forget.

When it’s just us, we’re in the Mikaere bubble. We can only see his path that he’s wandering down at his own pace. Smiles are frequent and his vision is getting better and his tone is improving. All positive positive things. At Mikaere pace this is all positively break-neck full speed ahead.

But then I see a child Mikaere’s age and their developmental milestones and I’m heartbroken. It’s hard not to compare, despite my attempts not to. But it’s hard not to grieve those what-could-have-beens with Mikaere. He’s not doing any of the things they are. He’s worlds away.

There was this little child the other day – in a café. Younger than Mikaere. And this child was so different – handing things back to her parents, shaking her head, pushing things away for no, smiles for yes. Standing on tip toes to peer over the back of a couch. Curious, and alert and aware. It was like Mikaere’s peers took several giant leaps forward while I wasn’t watching and I was blindsided.The grief is overwhelming.

The other thing is that with Mikaere’s current developmental level – it’s easier to manage emotionally when he was little and tiny. Babies don’t typically move about anyway. But as a long legged, skinny boy, I can see his body is made for running and moving and going. And Mikaere wants to wriggle and move. But he physically can’t do that. Not yet. Possibly not ever. And the bigger he gets the more difficult it is.

This grief, I’m beginning to see it’s never going to go away. It’s cyclic, ever present.

And it sounds selfish, but with seeing our NCT and baby friends regularly – I couldn’t be blindsided. We were constantly catching up, so small developmental leaps were easier to manage. It’s just how it was. It’s the space and the distance that make it difficult. The surprise.

I shake it off and love on my kid, knowing his path is his own and willing my mushy insides to get on board with the unconventional path we’re walking down.

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Team Mikaere is for those following the journey of Sam, Elly and Mikaere - a baby boy with Nonketotic Hyperglycinemia. We've partnered with Joseph's Goal to raise funds for the NKH Research done by Dr Nick Greene as part of UCL. He's currently the world leader in NKH research.

We're so hopeful that better treatment options will be found for kids with NKH. It's so rare, less than 500 kids worldwide are diagnosed with it. Every pound we raise has a direct and profound effect on the research that can be done.

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Help us raise money for NKH Research. Help us help give Kai future. It sounds so cheesy, but holds a sobering amount of truth for us. NKH is terminal, without treatment Kai may not have a future.